Summer 2016 Newsletter

August 5th, 2016

Please find the summer 2016 edition of our newsletter at the link below.  Inside you’ll find news of our most recent research grant awards, conference updates including registration links and hotel reservation information, along with other important updates and family news. Sincere thanks to Jimena Del Azar and Vivian Mathis for helping provide a Spanish translation of the newsletter. Summer 2016 newsletter

Love Some1 with Glut1 campaign video project

July 26th, 2016

Share your heart with us! AND be a part of the Love Some1 with Glut1 2017 Campaign Dear Glut1 Deficiency Families, The Glut1 Deficiency Foundation conducts an online fundraiser Love Some1 with Glut1 Fundraising Campaign* each year from Valentine’s Day, February 14th to Rare Disease Day, February 28th.  It is the only official fundraiser conducted by the G1D Foundation, and all proceeds help the Foundation in its mission of…

2016 Grant Award Recipients

July 24th, 2016

  Thanks to the generous support of friends and family of Glut1 Deficiency patients, the Glut1 Deficiency Foundation recently awarded over $150,000 in research grant awards.  We are deeply grateful to all who support the work of the Foundation and make these awards possible, and we are equally appreciative of the dedicated scientists who are interested in helping our community and improve the quality of…

New Jersey Family Gathering

June 4th, 2016

Tom and Maria Rebbecchi are hosting a Glut1 family gathering at their home in New Jersey on July 16th.  They are inviting all families from the surrounding areas to join them for a fun day of meeting and sharing.    Please see details below and RSVP by July 7th if you are able to attend!

Spring 2016 Newsletter

May 12th, 2016

  Our Spring Newsletter is ready and posted to our website at the link below.  You’ll find updates on the results of our Love Some1 with Glut1 campaign, our Research Grant Award program, 2017 conference planning for our Nashville gathering, and some great family updates. Spring Newsletter  

Gears for Gracie

April 17th, 2016

The Snyder family is hosting their second annual 215 Jeep Crew supports “Gears for Gracie” because they are Geared Towards a Cure for Glut1-ds! If anyone is in the Philly area, they would love to have you join them. Last year they raised $3500 at the event and hope to beat that total this year. Please contact Joanna with questions or for more information! June…

Miles for Millie

April 3rd, 2016

Come join us, the Meisner family, for an event to benefit research for Glut1 Deficiency! Our sweet Millie, and the amazing kids sharing this Glut1 journey, are our inspiration and we are riding toward finding a cure for Glut1. Penn Medicine’s Orphan Disease Center (ODC) is sponsoring the Million Dollar Bike Ride on May 7 to raise money for rare disease research. Our team is…

Argentina Family Meeting

March 30th, 2016

A beautiful message from Vivian Mathis, creater of Glut1mom.com: Hug for the soul To have the opportunity to get together with parents whose children have the same syndrome as yours is an indescribable experience, a unique and happy experience. You can greet them and hug them as if you’d known them your whole life; you want to ask them a million questions, and you realize…

FACES epilepsy conference at NYU Langone Medical Center

March 21st, 2016

For those in the New York City area, there will be a FACES conference (Finding a Cure for Epilepsy and Seizures) at NYU Langone Medical Center on April 10th. There will be updates on cannabis therapy, genetics, and some of the issues faced by epilepsy patients. Dr. Eric Kossoff and Dr. Mackenzie Cervenka will share information on ketogenic diets from infancy to adulthood and the…

Lanes and Links on the Lake

March 10th, 2016

  We thank the Treland-Neumann family for a seriously fun and seriously successful annual fundraising event – Lanes and Links on the Lake. The 2016 edition was held this past weekend at Pat’s Landing Resort in Hayward, Wisconsin, with ice golf and frozen turkey bowling!  They raised over $9300 this year, splitting the proceeds between the Glut1 Deficiency Foundation and the Hayward Community Food Shelf…